More than five million Americans suffer from Dementia. My mom was one of them. A site for young adult caregivers struggling and coping with "the long goodbye." Created in 2007. Ended in 2014. Stay tuned for my new blog about life after dementia, called "The Recovering Caregiver."
Another Mother’s Day has come and gone. It’ll be two weeks this Sunday. I think. OK, so I’m totally late to the game here. I wanted to write about it; but for me, the day was just another day. Sort of. It was my first Mother’s Day. It was my Mother’s 37th Mother’s Day. She was probably aware of maybe 30 Mother’s Days, give or take …………………………………………… who knows. It’s hard to say. Still, for a long time, Mother’s Day hasn’t meant that much to me.
(if your mother had no idea what day it is, you too might find it really hard to go all out on her behalf; I mean, at that point, it’s more about you, not about her. It feels cheap, even forced. At least that’s how it felt to me.)
After my mom started forgetting things like Mother’s Day, I stopped paying attention to the day. Besides being hurtful, the day is over the top and absurd. I mean, let’s be honest here, if you are so inclined to thank your mother because it’s Mother’s Day, you’rea) thanking your mother for doing her job. b) it’s a little self-congratulatory; moms you signed up for this; and c) maybe you should start thanking your mother on a daily basis.
By the way, C is free advice.
That said, I suppose this Mother’s Day was different. I’m now someone’s mother. I received my first Mother’s Day cards. People reached out to wish me a Happy Mother’s Day. Still, it was all very foreign to me. And yet, despite the lovely sentiments, I managed to remain mostly indifferent about it. OK, I managed to ignore (or rather, avoid) the day (and what it means) to the best of my abilities. I didn’t want to feel anything. Because maybe if I actually felt something, if I let the day mean something to me, it would have been a betrayal……………………………………… to my own mother.
I think next year will be different. Two weeks ago, it was just too much to process. Too much to take in. Just another reminder of the past; the horrible, horrifying past.
You see, when I sit down and think about the last ten years and process the loss, the sadness, the disappointments, the grief, the frustrations, the letdowns …………………………………………… to inhale that kind of pain…………………………… I think few people get it. Watching your mother endure this kind of agony, watching your mother pound on glass inside a looney bin………… witnessing horror after horror………………………………… this endless agony, it does something to you; it alters your DNA.
Mother’s Day is an awkward holiday. I say awkward because while I understand why we make such a fuss about this day, I can’t help but find it to be somewhat, well, insensitive — to put it bluntly, Mother’s Day is another reminder of what I, and others like me, don’t have. My mother is alive, however, she is far from well. My mother is slowly dying from Frontotemporal dementia. FTD, or Pick’s disease as it’s sometimes called, affects the frontal and temporal lobes of the brain, or the area of the brain that makes us who we are. Call it your personality center. Like Alzheimer’s disease, FTD can cause memory loss, but it can also cause dramatic personality changes, including apathy; many lose their ability to communicate, and because the disease gnaws away at the gray matter that controls behavior, many with FTD act out; they may yell, become socially inappropriate, impulsive, aggressive and completely incapable of understanding that their actions have consequences. Adding to an already challenging and misunderstood situation, some individuals, like my mother earlier on, don’t even realize that something is terribly wrong.
The result for many of us with a “behavioral” parent is that we live with the stress, the stares, the comments, or worse, we live in fear of being asked to leave yet another assisted living facility.
Dementia is not a quiet disease.
Alzheimer’s disease is the number one type of dementia, accounting for about 50-to-80 percent of dementia cases. Unfortunately, more needs to be done in terms of educating the general public about this and other, lesser-known dementias like FTD. Alzheimer’s disease is the sixth leading cause of death in the U.S., and unlike diseases that were once considered a death sentence, i.e.: heart disease, breast cancer, prostate cancer, HIV/AIDS, and stroke, dementia can’t be cured, prevented or even slowed. This is not a manageable disease, and much more needs to be done in terms of funding and research. Today, more than five million Americans have Alzheimer’s disease and that number is expected to hit 16 million by 2050. To put that into perspective, according to the 2011 U.S. Census 3,880,244 people live in Maricopa County alone, and 6,482,505 live in the state of Arizona.
This disease is also expensive, and family members are often the ones who do the heavy lifting — emotionally, physically and financially. Just last year, some 15 million family and friends provided over 17 billion hours of unpaid caregiving. If you put a price tag on their time, it would amount to around $210.5 billion.
This is the calm before the Tsunami.
I always say, we have no survivors. My mother can’t tell you her story. She can’t even tell you if she is in pain. It’s difficult to talk about who my mother was because she’s not dead — to talk about her in the past tense, to say “she was” sounds so cruel; and yet, sometimes the only way to describe the woman who raised me is in the past tense. My mother was a sweet, gentle soul who devoted herself to her family, to her friends, even to complete strangers. Everyone who knew my mother loved her. She was the heart of our little family. Though the disease has robbed her of so much, her core — that gentle soul — remains intact. Today, when someone approaches her, she just wants to hold their hand or give them a kiss.
Like a child, she seeks love and affection.
As each year rolls into the next — I started noticing something was wrong in 2004… I was 27 — my memories of who she was before FTD fade. I suppose that’s time doing what it does best. And then Mother’s Day comes around. For me, it’s a tragic, in-your-face reminder of what I long for most. Seeing daughters having brunch with their mothers, laughing and talking… I tend to turn away. It’s just easier that way.
My mother doesn’t know my name, she doesn’t even know who she is. Thankfully, she does recognize me. Every time she sees me, she smiles and showers me with kisses. She tucks my hair behind my ear. She takes my hand and, in her own way, tells me about her day as we walk. Even though my mother’s language ability has been reduced to no more than a few words, I understand her. She is my mother, after all.
Yes, I would love to enjoy the kind of relationship that develops between adult daughters and their mothers — that special friendship which occurs later in life. But that’s not my reality. It never will be. This is my reality and I’ll take what I can get because we’re on borrowed time. One day, she won’t recognize me. She’ll just stare.
Hopefully, though, she’ll still take my hand and walk with me.
To learn more about Alzheimer’s disease and other related dementias or to make a donation visit http://www.alz.or/dsw.